If you would like to schedule a consult with our Undiagnosed and Rare Disease Program, please call (414) 266-2771. Providers can contact the lab at (414) 266-2500 for billing details or to order tests.
If you’re from out of town, please call (414) 266-6300. Our Access Center will help you set up a visit to Children's Wisconsin. They can also help with lodging and provide other forms of support.
Before
Before your consult, we will ask you to:
- Bring records from other doctors, including test results, scans and diagnoses
- Complete forms about your child's health and symptoms
- Be ready to discuss your child's symptoms, including when they started
During
Once we accept your child into our program:
- Dr. Kliegman and a genetics expert will talk with you by phone to learn about your child’s health.
- Our team will work together to find any patterns and consider all diagnoses, including rare conditions.
- A care team will help plan your visit, including travel, lodging and working with insurance.
When you and your child arrive:
- Your visit may include several visits and tests.
- A team leader will meet with you at the start and end of each day.
- A genetic counselor will work with your family. They will guide you through the process and explain the plan for care and testing.
If your family is not able to travel, we may meet with you by phone, email or video. We’ll look over your child’s health records and work with their doctor to plan next steps or get a sample for testing.
After
We’ll share the test results and any updates with you. If we don’t find a diagnosis right away, we’ll keep working with your family and our team to find answers. We’ll guide you through the next steps, discuss treatment options we may offer and provide helpful resources.